As Ruth recently explained in her blog, disability is not illness. And yet, disabled people do become ill and chronically ill people may become disabled. Most people gasp with shock whenever we reveal the woeful inadequacy of our aide back-up plan. It's truly by God's amazing grace that we haven't gotten into more severe trouble these past five years.
The disgusting reality is this: good, reliable, honest, and capable help is hard to find. Actually, it's pretty near impossible. In addition to aides who swoop in, watch t.v., and eat pizza, there are those who behave more feloniously. Imagine the absolute worst and it has been inflicted by an aide on someone needing personal assistance.
My reluctance to cut back on my hours probably has something to do with having heard these stories from Ruth and others in her situation. Still, because we know it's time to start searching for back-up, that's what we're doing. Ruth is already exhausted by the prospect.
"We may have to go through a lot of aides before we find one who will work out."
I don't see this as a major problem and tell her how I plan to be fully present and involved during the screening process.
"I dibs the hospital bed. You take the wheelchair."
